Half my blood tests back but not the rest....

[TheSootyShow]

So I posted yesterday about being told I was likely to have celiac disease. Since then my GP has rung me and told me that she's got it wrong and that my TTG results are yet to come back so we are waiting on these. She apologised and said that she read it quickly and saw some abnormality and assumed it was all back. 

 

I do however have this back (amongst others but they are in normal range) 

IGA
Immunoglobulin A level 3.06 g/L [0.8 - 2.8]; Above high reference limit

Serum alanine aminotransferase level 139 U/L [0.0 - 35.0]; Above high reference limit.

 

I am really confused now. Does anyone know if this might still indicate celiac? It feels like such a waiting game and I feel like I was just getting to grips with the fact I probably have it, when now it's alot more possible I don't. TIA

 

[Scott Adams]

The IGA test result indicates that you don't have an IGA deficiency, which means that you TtG-IgA results are accurate. If your TtG-IgA results are positive, then it means that you likely do have celiac disease.

The serum alanine aminotransferase level indicates you have a potential liver issue which you should follow up on (undiagnosed celiacs who eat gluten sometimes have liver issues, which can normalize on a gluten-free diet.

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

 

 

[TheSootyShow]

7 hours ago, Scott Adams said:

The IGA test result indicates that you don't have an IGA deficiency, which means that you TtG-IgA results are accurate. If your TtG-IgA results are positive, then it means that you likely do have celiac disease.

The serum alanine aminotransferase level indicates you have a potential liver issue which you should follow up on (undiagnosed celiacs who eat gluten sometimes have liver issues, which can normalize on a gluten-free diet.

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

 

 

That helps me understand so much more and makes me worry alot less than you so much. So would you suggest from the results I've got so far (and my symptoms) it's likely that my next blood test will come back raised?

[Scott Adams]

There is no way to be sure at this point, but let us know.

If your tests do come back negative gluten could still be an issue for you...approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

[TheSootyShow]

On 10/12/2023 at 7:09 PM, Scott Adams said:

There is no way to be sure at this point, but let us know.

If your tests do come back negative gluten could still be an issue for you...approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

So I had my TtG-IgA results back yesterday and they were 0.66 when "normal" < 3. Feeling slightly frustated because there feels like there's so much wrong with my body and no answers. My ALT is still extremely high and so was my iga (which I believe is less of an issue) is there any chance I have a false negative? I think I ate enough gluten in the six weeks, but I really don't eat alot anyway, I weigh about 45kg and eat tiny portions. So I'm wondering whether I didn't have enough gluten in me for the test to be accurate. Around 2 meals a day contained gluten but I can't pretend as if I had masses of it. 

 

I know I still could have NCGS. Would this cause elevated ALT? Do you think I should insist on a biopsy? Not sure what my next steps are. 

 

I will of course book an appointment with my GP. 

[Stumplet]

Hi,

There are additional antibody tests that can detect coeliac disease, some people will only hit on one of them. 

Also a small minority of people with coeliac disease (5-15%) will not test positive on any antibodies but still have the condition when I biopsy of their small intestine is assessed.

Addtionally, untreated coeliac disease can cause the liver enzyme that is raised in you to be raised without an obvious cause.

Therefore I would recommend the following

1) Continue consuming as much gluten as you can, and get the following blood tests: Deamidated gliadin peptide (DGP) and Anti-Endomysial Antibody (EMA). If either one of these is positive, this can also indicate coeliac disease. Depending on your country, you may have to pay for these tests privately

2) If both of these tests are negative, but you still suspect you have coeliac disease, request a referal to a gastroentrologist and ask them to perform an endoscopy and take small intestinal biopsies. The recommended number of biopsies are 2 from the duodunal bulb, and 4 from the D2 area of the small intestine. These samples will then be assessed microscopically for features typical of coeliac damage. 

If either of those tests are postive, you will still need to be refered to a gastroentrologist and have the same biopsies as described previously to confirm the diagnosis.

Hope this helps!

[TheSootyShow]

8 hours ago, Stumplet said:

Hi,

There are additional antibody tests that can detect coeliac disease, some people will only hit on one of them. 

Also a small minority of people with coeliac disease (5-15%) will not test positive on any antibodies but still have the condition when I biopsy of their small intestine is assessed.

Addtionally, untreated coeliac disease can cause the liver enzyme that is raised in you to be raised without an obvious cause.

Therefore I would recommend the following

1) Continue consuming as much gluten as you can, and get the following blood tests: Deamidated gliadin peptide (DGP) and Anti-Endomysial Antibody (EMA). If either one of these is positive, this can also indicate coeliac disease. Depending on your country, you may have to pay for these tests privately

2) If both of these tests are negative, but you still suspect you have coeliac disease, request a referal to a gastroentrologist and ask them to perform an endoscopy and take small intestinal biopsies. The recommended number of biopsies are 2 from the duodunal bulb, and 4 from the D2 area of the small intestine. These samples will then be assessed microscopically for features typical of coeliac damage. 

If either of those tests are postive, you will still need to be refered to a gastroentrologist and have the same biopsies as described previously to confirm the diagnosis.

Hope this helps!

Thank you so much that's really helpful. Can I skip the tests and see if my GP will go straight for a biopsy? If there's some issues with my liver surely the will have to figure out what's going on there as well? My GP is being really helpful and is really keen to work out what is going on. 

 

Also I am in the UK.

[cristiana]

Hi @TheSootyShow

Love your name - I was a great fan of Sooty when I was little, and my children too!

I'm in the UK so thought I'd chip in here.  I know someone who had a private endoscopy with no positive blood tests - she had had a lot of gastric issues and just wanted to rule it out, and a private consultant was happy to do it.   She didn't have coeliac disease in the end, but wanted to know for sure as her father had been diagnosed with it in his seventies.

But before going down the private route, definitely ask your NHS GP would be happy to put you forward for one.   

Two helpful UK resources which might help:

https://www.nice.org.uk/guidance/ng20

Also,

https://www.coeliac.org.uk/glossary/helpline/#:~:text=Our Helpline is staffed by,to 4pm Monday to Friday.

[Stumplet]

14 hours ago, TheSootyShow said:

Thank you so much that's really helpful. Can I skip the tests and see if my GP will go straight for a biopsy? If there's some issues with my liver surely the will have to figure out what's going on there as well? My GP is being really helpful and is really keen to work out what is going on. 

 

Also I am in the UK.

No problem I am happy to help

It's great that your GP is helpful and receptive!

A couple of questions for you, that may be relevant to the situation. 

Do you have any other autoimmune conditions, and if so, which ones? Does anyone in your family have coeliac disease?

Regarding your raised liver bloods, several things can cause this. Liver disease is one, so if you GP hasn't already done this, ask about having an abdominal ultrasound to check your liver for physical signs of damage, and a liver antibody blood testing panel for any autoimmune liver diseases. In addition to liver disease, excessive alcohol consumption and being very over or underweight can cause this liver marker to be raised too. I saw your weight is low, but I don't know your height, so i'm unsure if you're underweight (as you might be short). Untreated coeliac disease can be a cause of raised serum alanine aminotransferase if other causes are ruled out, so this is also something to consider.

Regarding investigating possible coeliac disease, I think a two pronged approach would be the best idea. I'd recommend more blood testing AND being referred for biopsies.

1) Ask your GP if they can request the following bloods even though you've had negative tissue transglutaminse (they might not be able to though depending on local NHS funding rules):

deamidated gliadin peptide (DGP) and endomysial antibodies (EMA)

If you GP isn't able to order these tests for you, I strongly recommend paying privately for them. I am currently investigating where to get private coeliac bloods in the UK, so once I know I will let you know (if you need to go down this route).

The reason for pursuing the bloods in addition to the biopsies, is if your biopsies were ambiguous (e.g. some damage but not as much as typically seen in coeliac disease) a postive blood test would support the diagnosis of coeliac disease.

2) 

Speak to your GP about being referred to gastroenterolgy for possible coeliac disease, or you may want to ask if you can be referred directly for an endoscopy and biopsies.

I'm less sure on the best route here, as it's very important that when the biopsies are done that the correct number are taken from the correct area. I slightly worry that if you didn't see a gastroenterologist first that the person who did the endoscopy might not know this. But if you did want to ask about going straight in for the biopsies to speed things up, perhaps your GP could state clearly in the referral how many biopsies should be taken and from where. It's recommended to take at least 2 biopsies from the duodenal bulb, and at least 4 biopsies from the D2 area of the small instestine. 

I think having a strong referal from your GP would be very useful anyway, as some gastroentrologists are more knowledgable than others about seronegative coeliac (luckily my gastro was straight away was like yeah at least 5% of coeliacs don't have antibodies we'll do biopsies anyway - but I know that isn't always that case).

I really hope this helps! and i'm happy to answer any more questions if you have any

 

Also just to add, many GP's aren't actually aware seronegative coeliac exists! But hopefulyl if your GP is good they will listen to you and be receptive to it as a possiblity

 

[Stumplet]

I also agree with a previous comment about contacting the coeliac uk helpline, they were very very helpful to me!

 

[Stumplet]

Something important I missed from my previous comment (and I can't work out how to add it) is for blood tests and biopsies to be accurate, you need to eat gluten in two meals per day, for at least 6 weeks (the longer the best though). The equivilent of one slice of brown bread, in two meals per day (so at least two slices a day) should be enough. But the more you can manage the better!

[TheSootyShow]

Thank you! I am 5 ft 4. I know I am slightly underweight but nothing major. Never drank alcohol in my life so can't be that! I have no other autoimmune conditions and coeliac is not something that I believe is in my family. I might ask my dad's side of the family just to be sure, but as far as I'm aware theres no one. Apart from my symptoms previous to this I would say I was fit and healthy. At the beginning of August my serum alanine aminotransferase levels were in normal range. 

 

 

I rang my GP yesterday but they said they couldn't book me in because they were still waiting for my blood tests. Although I can see the Ttg atg one in the app it came through Friday. Not sure if this was missed, or whether there's still one more we are waiting on? 

 

Did you not test positive on the blood test then and only from biopsy? 

[Stumplet]

Yeah I think it's more anorexia or obesity that can cause an issue, I don't think (but i'm not certain) just being slightly underweight would be the cause, unless you've been losing alot of weight very quickly?

My main worry here is that rapid increase in serum alanine aminotransfersase. Have you started any new medications or supplements in the past few months? and if so which ones? As some medications can impact the liver. 

I don't have the expertise to know if coeliac disease is a plausible explanation for that marker to go from being normal to 4x the upper limit that quickly, but perhaps your GP could write to gastroenterology and ask them, as they are experts in both liver and digestive health.

I have had 2 out 3 of the available antibody tests and tested negative on both, my biopsy results haven't returned yet, so I may not actually have coeliac disease. However, I know several people who have tested negative on all blood tests and have had positive biopsy results. So it is possible

Just keep checking back with your GP, as you do need to get to the bottom of why your liver bloods are abnormal. 

[Stumplet]

Just to clarify: coeliac disease can cause raised serum alanine aminotransfersase, i'm just unsure if it would happen that quickly.

[TheSootyShow]

39 minutes ago, Stumplet said:

Yeah I think it's more anorexia or obesity that can cause an issue, I don't think (but i'm not certain) just being slightly underweight would be the cause, unless you've been losing alot of weight very quickly?

My main worry here is that rapid increase in serum alanine aminotransfersase. Have you started any new medications or supplements in the past few months? and if so which ones? As some medications can impact the liver. 

I don't have the expertise to know if coeliac disease is a plausible explanation for that marker to go from being normal to 4x the upper limit that quickly, but perhaps your GP could write to gastroenterology and ask them, as they are experts in both liver and digestive health.

I have had 2 out 3 of the available antibody tests and tested negative on both, my biopsy results haven't returned yet, so I may not actually have coeliac disease. However, I know several people who have tested negative on all blood tests and have had positive biopsy results. So it is possible

Just keep checking back with your GP, as you do need to get to the bottom of why your liver bloods are abnormal. 

Let me know if you test positive/negative via biopsy because that would be really interesting.

 

I spoke to my GP and she can't get anymore tests via NHS but she had referred me to the Gastro team. She said she will write to them and explain my elevated results and symptoms to see if they will still take a biopsy or she also said there's other tests the can order. 

 

The confusing part here is: she then said that I can now go on a gluten free diet to relieve my symptoms and said I could have since last week when I had my blood tests. She said she will rebook the ALT and Iga In 6 weeks to check if it's come down. 

 

My thoughts here are:  if I stop/reduce eating gluten then that means I will probably feel better but that doesn't help things if the gastro team decide that they do want to see me. Although apparently theres a high chance they will turn me away and just say it's a sensitivity. I really don't feel comfortable with this because I don't feel like we've got to the bottom of it. I have lots of symptoms which feel like they are getting worst. New ones are my hands and feet tingle and go numb all the time, my eczema/rash is so itchy it's driving me mad it covers my back and it's really effecting me. Extreme fatigue. As well as all the typical celiac symptoms. I'm also suffering a lot with low mood because I just want to know what's wrong with me and how to get better. 

 

My GP did say well it doesn't really matter whether it's a sensitivity or celiac because you will cut it out in either, but for me I would want to know and it would depend how careful I was with contamination. Mostly because if it's a sensitivity, I probably would want to "cheat" sometimes when I'm in different countries or are finding it really hard to find gluten-free foods. 

 

I really don't know what to do now. My instinct tells me to stay eating gluten and suck it up and wait for what the Gastro team say (if they accept my referral, they should do right? If my GP really pushed for it my symptoms and blood tests show there's something clearly wrong) because I really don't want to skip corners with this. I want to feel better of course, but I'd rather what was best for my long term health.

 

Any advice would be really appreciated. Should I get a second opinion? I don't really feel listened to anymore. I know Gps how hundred of patients they need to see but it feels like they are satisfied to just call it a day where we are even though she said she really thought my results were going to be positive. 

[TheSootyShow]

Another thing to add - my GP said that the reason my blood tests could have been raised could have been to stress or because I had a viral infection. Admittedly at the time I was recovering from a cold - but surely that couldn't send it spiking up like that. She did say ALT is non specific to the liver and she really didn't seem concerned by the high numbers. 

[Stumplet]

It could be due to an infection! If it helps, these are the blood tests my GP did in response to my abnormal liver bloods, and tbh i think you should have them too.

Hepatitis B & C, Lipids, Ferritin, Liver autoimmune panel profile, Immunoglobulins, Caeruloplasmin

[knitty kitty]

@TheSootyShow,

You may not have eaten sufficient gluten for long enough to provoke measurable antibody production.  

Six weeks may not be long enough to produce enough TTg antibodies to get into the bloodstream.  In such cases, continuing the gluten challenge and testing again at eight and twelve weeks is an accepted protocol.   

Request the complete Celiac panel of tests which include the DGP IgG and DGP IgA tests in addition to the TTg IgA test.  

Consider the amount and type of gluten you are eating for the gluten challenge.  

Cookies, pastries and cakes are made with flours that have less gluten than the flours used to make thick chewy pizza crust and artisan bread.  

While three grams of gluten is enough to provoke symptoms and make one feel ill, ten grams of gluten is needed to provoke an antibody response sufficient to get antibodies into the bloodstream where it can be measured by those blood tests.  

Non alcoholic fatty liver disease (NAFLD) is commonly found in Celiac Disease.  NAFLD causes high Alanine Aminotranferase levels.  Subclinical Thiamine deficiency has been linked to NAFLD.  

Thiamine Vitamin B1 level should be checked by the Erythrocyte Transketolase test.  

More Thiamine is required by our bodies when we are fighting an infection or other illnesses, under emotional stress, or very physically active.  During such times, we can deplete our stores of Thiamine quickly.  If we cannot absorb sufficient thiamine from our diet due to malabsorption as occurs in CeD, we can become deficient in Thiamine in a few days.  

Symptoms of low Thiamine include hands and feet tingling and going numb (peripheral neuropathy), extreme fatigue and low mood (depression), forgetfulness, anxiety, panic attacks, mood swings, irritability, brain fog,  insomnia, unexplained weight loss and inability to gain weight, or excessive weight gain, lower leg edema, hair loss, gastrointestinal symptoms, blurry vision, and headaches, to name a few.

It is possible to have a subclinical deficiency in Thiamine outside of CeD.  High Calorie Malnutrition occurs if one has been eating a high carbohydrate diet without sufficient intake of nutrients to turn carbohydrates into energy and enzymes needed for health.  

Thiamine is just one of eight essential B vitamins.  Thiamine just runs out first.  Celiacs usually have deficiencies in many of the vitamins and minerals our bodies need to heal.  Correcting nutritional deficiencies is part of proper follow up care for Celiacs.  

Hope this helps!

References:

Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/

Patients with celiac disease are at high risk of developing metabolic syndrome and fatty liver

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7873403/

Relationship between alanine aminotransferase levels and metabolic syndrome in nonalcoholic fatty liver disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2491691/

Thiamine deficiency disorders: a clinical perspective

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/